Progress In Inches

We’ve made some progress this week! Maybe things are getting better!

(I know – I should shoot myself now for saying that. It will all go to hell now that I’ve made a positive parenting-related comment!)

Jack saw his therapist on Monday. Together they brainstormed ideas for how to deal with anger (besides hurting himself). Jack used one of these methods last night – he drew a picture of the thing that had angered him, then ripped it up and taped it back together in a funky pattern. This seemed to give him a bit more control over the situation and he was happy that he “showed it.” I was proud of him!

He has seemed to be more open to talking about difficult subjects since Monday. Back when Jack was diagnosed, we were given an activity book that is supposed to help kids explore their emotions about their chronic illness. Jack has mostly refused to talk about cancer at all before now. But last night I said I had a neat workbook that I hoped he would try and suggested that it would be helpful with some of the frustration he’s been feeling. I sat next to him and flipped through the book, summarizing the different activities. When I mentioned “Things That Make Me Feel Alone,” Jack said he felt alone when his dad takes him to the redwoods and also on an empty street. 🙁 He didn’t want to draw or write that down, though. I moved on and when I got to the one entitled “Things I Hate About The Hospital And Clinic,” he grabbed the packet and took off to the living room where his colored pencils were located. He drew a syringe, an elevator, a dressing change, and he wrote down ‘procedures’ because “I don’t know what they look like since I’m asleep.”

It was interesting that in thinking about it, he said there are several things that he doesn’t mind at all – i.e. the waiting, the examinations, the infusions. I made sure to point that out to him – it’s not all horrible even if it’s boring!

He went on to another page and drew the reactions of people around him when he was diagnosed. His picture showed indifference, the one of his parents showed worry, the doctor looked confident (“like ‘I know how to fix this!'”), and new people he met were nervous.

WOW. I was so relieved that he was actually expressing these things! Jack is a total people-pleaser and doesn’t want to talk about things that aren’t happy or cool because he doesn’t want anyone to be upset. It was part of the reason for the delay in realizing he had cancer – he won’t complain about something until it is unbearable. And even when he does complain, it’s understated – “my throat feels weird” becomes puke two minutes later. “My legs are floppy” means his legs are feeling weak and unsteady and he can’t walk well. The things going on with his body are generally the last thing on his mind (which can be good and bad).

We’ve been encouraging him since he was admitted to the hospital to complain more. I know that sounds strange! But his physicians would ask if he was having diarrhea or headaches or cloudy urine or tingling in his hands and we would have no idea. He’s king of “I’m fine!” But seriously, kid, we need to know if anything at all is bugging you because it can be a sign of something big!

Anyway, he’s getting better. He definitely complains more, although often still in a roundabout way. It’s weird when you have to suggest to your kid that he needs to eat or maybe he needs some allergy or headache medicine! And while I know what to look for to anticipate these things (hm, he’s very intent on coloring that dragon even though it’s lunch time and he is surely hungry!), others don’t and I’m not there all the time.

One thing he definitely hasn’t had trouble complaining about is clothing! It’s been an ongoing battle to find comfortable things for him and sometimes we lose the battle. However, I took him to buy (a third pair of) new shoes two nights ago and after trying nearly every pair in the store on, he was absolutely sure that some fur lined boots were The Ones. He freaking loves them. Yay! Now to find more pairs because those are not gonna last!

I’ve ordered socks without seams (they have them on Amazon!) and socks of various lengths and good quality in the hopes that we can get past his sock issue (also – he doesn’t feel right NOT wearing socks). And yesterday I ordered NINE pairs of shoes from Zappos that looked comfortable – some of which are fur-lined and others that are just fairly trim in design. I hope something works. Summer is coming and he’s not going to be able to wear those fur-lined boots forever. (I’ve tapped out my local resources for shoes – at least as far as how much I can afford!)

I’ve spent ungodly amounts of money on clothing for Jack this year. There should be a special charity for soft, comfortable clothing for kids with cancer!

David took Jack out for ice cream yesterday after he got 10 lilypads colored in on his behavior chart (he gets one each time he finishes homework, brushes his teeth without dawdling, and remembers to not maul the cat). We’re trying to reinforce the fact that he’s good and does good things because he’s WAY too hard on himself. The therapist said we should avoid charts with sad faces since he already focuses on his ‘bad’ behavior so much. Anyway, this seems to be working.

It’s a weird balancing act to parent such a sensitive kid. It’s nearly impossible to discipline him because he already punishes himself more than necessary! I’m not exactly a subtle person so it’s been challenging to dial back my reactions to some of the things he does – even a stern look will have him in tears in no time flat! Thank goodness I’m not more authoritarian – that would crush him!

The insight shared by you all has helped me, as well. I’ve learned that six year olds are very particular and kinda jerky. I’m trying to remember that his behavior is usually not a reflection of what I’m doing (or not doing) – it’s more about what he is feeling or trying not to feel. I can help guide him but I can’t fight all these battles for him.

So…progress for him AND me. I’ll take it!

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Comments

  1. That’s great news on your son sharing more about his feelings. In terms of the clothing/shoe piece, you might want to check into support with sensory input so that he could slowly overcome his discomfort with clothing. I just read a great post this week over at http://www.millionsofmiles.com/2013/03/our-sensory-journey-and-10-fun-sensory.html. She explains strategies which have been helpful with moving her son forward and what a difference getting help with strategies has made, particularly in the shoe department. It sounds like your son’s challenges in that arena are much milder, but I just thought I’d pass along the link.

  2. Progress is awesome.

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